FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!

May FA Hangout 2020

The FARA Ambassador Program presents an FA Hangout talking about: Your favorite foods! What are they? Do you follow a diet? How do you make cooking with FA easier? Tell us! May 19th and 20th!

HEADS UP! The Hangout on May 19th will be held at noon Eastern to include the international community better. May 20th will still be held at 8pm.

At FA Hangouts, we laugh, we connect, we hangout, we learn from and about each other...it is so fun! It is just an informal discussion with a theme. We just talk when the theme has run its course, no pressure. People who just want to listen are very welcome!

Every Hangout is open to anyone 18+ with FA and a translator if needed for hearing or speech difficulties. (mark your calendars, FA Hangouts will be the last consecutive Tuesday and Wednesday of the month, except on holidays and the like) at 8-9:30 PM EST.

What's a typical day for you? I get up early with dad before he goes to work. Most days, I undertake study, watch TV, play board games and make my own gift cards.

How long have you known you are living with FA? I was first diagnosed as a five-year-old in 1997, but I didn't really understand what it meant. It was confirmed through a blood test, which was fairly new at the time. I have very little memory of life prior to my diagnosis of FA.

Elizabeth Bowen

My name is Elizabeth Bowen. I was born and raised on Hilton Head Island, South Carolina. I was first diagnosed in 1998 when I was 14. I am the oldest of four and no one else in my family has had FA.

When I was 12, I wanted to be on the basketball team at school, so I went to get a sports physical and the doctor told me that I had scoliosis. My parents then took me to a doctor to address the scoliosis and due to reports of my lifelong lack of coordination and balance, what they thought was simply clumsiness, and movements the doctor noticed that I made, lead the doctors to think that there might be something else wrong and ended up testing my DNA and finding out that I had Friedreich's Ataxia. I played soccer at the time and for a while after. I also did join the basketball team when I was 12, but I turned out to be terrible at being on the court, lol.

How long have you known you are living with FA? ​I was diagnosed at 17 in 1990 after a year by two doctors. It was before the blood test existed, but when the test was available, ten years later, it was confirmed.